I suppose I should start writing my "recipe." Patience has to be the first ingredient for a number of reasons. When we first started this journey we had a lot of questions to ask but didn't receive any answers for a long time. For over a week we sat in the hospital watching our little boy, constantly wondering what was plaguing his body. We wanted so badly to know what was wrong. Isn't it every parents desire to help fix their children's problems?? During each step of the diagnostic process they kept drawing blood and taking cerebral spinal fluid for more tests....but where were the results? We even got the response "Well...we won't get any results until Monday because the lab is closed!" SERIOUSLY! How can a lab be closed! Don't they understand that this is my little boy, not just a serial number on the side of a tube. Now we find ourselves waiting again to remove the breathing tube they put in last Sunday morning. This has to be one of the most difficult "lemons" because while he is intubated we can't move him. What a struggle it is not to be able to pick up my little boy.
Thankfully we have gotten some answers, yet with each step there seems to be more questions. We have had to be very patience throughout this entire process. Although waiting has been excruciating we have had some small moments that have really touched our hearts and reminded us that we are an eternal family.
Before Drew's first seizure, one of my favorite moments was when he would creep his way right next to me to cuddle. He would snuggle his little face right next to mine and go to sleep. I loved it. When he was hooked up to a continuous feed EEG it was incredibly difficult to take him out of his bed. For two days we would sit right next to him and talk to him. One morning I was so exhausted that I laid my head on the edge of his bed and to my amazement, when I woke up, he crept his way right next to my face....just like at home. I was truly touched by this moment because it reminded me of what a sweet and beautiful personality he has. We had to snap a picture to capture the moment.
We had a difficult time keeping the gauze (which was holding the EEG electrodes) on his head!!! Even though these days have been long and tough...I have added a pinch of patience!
we are praying for little drew every day. we talked to alexis on skype today. she is a sweetheart! thank you for sharing your experience with us.
ReplyDeleteWhat a beautiful post. Thank you for sharing this intimate glimpse into your thoughts. He is so precious, and I'm so glad you get to experience little moments of joy in spite of all your agony. You are amazing!
ReplyDeleteBrittany, you are my hero. I love all of you so much.
ReplyDeleteDrew's sweet peaceful personality fills his hospital room, it is a privilege to be near him and you. Your ability to attend to the details of his care is remarkable. We love you guys!
ReplyDeletewhat a sweet story, and tender mercy. love you all darling!
ReplyDeleteHaving patience is so hard, but when I read your posts I can feel your strength. You are an incredible mother! Drew is such a lucky boy to have you as his mom.
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